Messenger: The Legacy of Mattie J.T. Stepanek and Heartsongs by Jeni Stepanek

November 11th, 2009 at 12:53 pm

The Message of Mattie

Warning: Bring tissues. This book is not for the faint-hearted.

Why? The constant specter of death looms over every page beginning with Mattie Stepanek’s three siblings all dying as infants from Dysautonomic Mitochondrial Myopathy—a very rare neuromuscular disease where cells don’t produce enough energy to work properly. In short, their heart and lungs didn’t always do what they were supposed to. Jeni explains: “when someone switches from physical activity to sitting, the heart self-regulates by beating more slowly. But Mattie’s heart could overshoot the mark and start to ‘forget’ to keep beating while he was at rest rather than simply slow a bit.” The result? All of the Stepanek children had oxygen masks and, at various times, trach tubes to breathe properly. And they all were dead—save Mattie—by age three.

As if that medical tragedy isn’t enough, mother and author Jeni Stepanek developed the adult onset version of the same disease, so she is in a wheelchair throughout much of the book, just as Mattie is. Together, they learn to persevere and care for each other with a strength that is both heroic and uplifting. Yet it’s hard not to wonder why she kept having children after what happened to the first two, but she addresses it fairly quickly, saying “early on I was told that subsequent children would not be affected. Not until Mattie was two years old and my third child was months from death did doctors understand that it was a condition of faulty mitochondria—an essential component of every cell in a person’s body.” As a result, the constant question throughout the book is who will die first? Jeni or Mattie?

Mattie nearly died a month after his birth. He turned blue in his car seat on their way to church, and had Jeni not performed CPR until the paramedics arrived, his story would’ve been as abbreviated as that of his siblings. His pupils were fixed and dilated, and the monitor recorded him being down for nearly six minutes. But he came through and the warned-about brain damage never manifested. Instead, he showed accelerated emotional and intellectual development, and even learned phonics through the speech therapy flash cards. By age three, he was writing his own poetry.

Despite the constant medical setbacks and financial struggles of the Stepaneks, Mattie continued to work towards his life goal: becoming a poet, a peacemaker, and a philosopher who played after every storm. With so many things against him, he not only learned to smile through it, but he made those around him smile, too. His joie de vivre was infectious. It’s no wonder that in his few years on this earth he developed a list of supporters, friends, and fans that is the ultimate A-list of celebrities. Oprah Winfrey called him “an inspiration.” Maya Angelou immediately recognized him when they met at a bookstore near the University of Maryland, and she even wrote the Foreword to this book. President Jimmy Carter called Mattie “the most remarkable person I have ever known.” When Jerry Lewis was given a lifetime achievement award at the Oscars, videos of Mattie were playing in the background. Even The Lord of the Rings star Sean Astin considered himself a fan and friend of Mattie’s, pledging to continue to promote Mattie’s causes after the inevitable happened.

What makes this book special is the access to Mattie’s life beyond what people might know from his many appearances on Oprah, The Larry King Show, Good Morning, America, and other talk shows. It gets behind the many New York Times best-selling books of poetry Mattie wrote. It pulls back the curtain on what it’s like to live with a disease that takes a child who loved to run and swim (and who even earned a black belt in hapkido) and turns his body against him, the muscles tightening and twisting, his fingertips bleeding, and his body choking off the oxygen he desperately needs.

What this book captures through new and previously published poems, journal entries, emails, photos, and correspondence with his many friends is Mattie’s indefatigable spirit that refuses to buckle in the face of near-constant adversity. He plays with Legos. He’s in love with the Harry Potter actress who plays Hermione Granger. He has a remote control fart machine. He has a rock collection. In so many ways, he’s a normal kid. Though always he was deeply philosophical and far wiser than his years. Just one example is the idea of “heartsongs” that carries throughout his poetry collections. He explains it in his journals as “Whatever it is that a person needs or wants, they understand why that matters, and that is the unfolding of their Heartsong . . . And as we learn in almost every religion or philosophy of goodness, it is in giving that we receive. In sharing our Heartsong with others, it goes out into the world, and somehow, circles back to us.”

Mattie finally lost his battle to Dysautonomic Mitochondrial Myopathy in 2004 at the Children’s National Medical Center in Washington DC, where he spent so much time receiving transfusions and treatments and care in the PICU (Pediatric Intensive Care Unit). At his birth, the doctors urged Jeni to leave him at the hospital and let nature run its course—his was a hopeless case. They told her it was all over many times throughout his magnificent life, and she never believed them. This book is an extension of Mattie’s commitment to living and making the world a better place. He always thought God had made him a messenger, and through this heart-rending account of his blessed life, the message continues today through the Mattie’s Peace Network, through his six Heartsongs poetry collections and his collection of peace essays, and through the lives of the many people he personally touched during the course of his thirteen years on earth. The book doesn’t end with his death but rather a celebration and accounting of his continuing message, and that’s no surprise—Mattie would’ve preferred readers end with smiles, not tears.

Thank you so much for such a powerful review of my new book, and my son’s life and legacy. I wrote this book because despite Mattie’s mortal absence for more than five years, more and more programs and events and memorial attributions are growing each year, that echo his simple and believably-stated message of hope and peace. I hope readers enjoy the book, which offers stories of Mattie’s wit as well as wisdom, and the celebration of his life as well as the sadness. This review will surely help readers understand that truth. Thank you, Jeni Stepanek, Ph.D. (“Mattie’s mom”).

Candice Sims

Loved this book. Very inspiring. Would highly recommend it! You will laugh and cry at the same time.

Jessica Judd

I can not say enough good things about this book! Mattie was a remarkable human being who could articulate many things I have felt but could never put the words to. Everyone needs to pick up Jeni’s book! You will definately be better for it!

Jane Stack

I highly recommend this book. Jeni and Mattie’s story is truly inspirational. Heroes and saints really do exist.

http://mattieonline jocelyn triggle

Jeni stepanek I would like to see a movie made out of the new book about mattie it would be a good movie